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Another Perspective

Hope...Frustration...Hope

Since my last blog I’ve been preoccupied with treating my CLL and writing Hangtown, an historical novel.

In March I began taking Ibrutinib, the current “wonder” drug for CLL. Three pills a day and the disease is contained and managed. The cost for the first month alone was just over $2700, with additional months coming in at just under $400/month (until the billing year starts over again). Expensive, but the promise of the drug made the choice easy. The Ibrutinib cleaned the cancer from my lymph nodes and other hiding places and put it into my blood stream where the cells could be more easily killed. I was a happy camper. While the Ibrutinib was taking longer than I preferred to bring my numbers down to the normal range, it was working. This was a time of hope.

Unfortunately, CLL is not my only health issue. I also have Atrial Fibulation (A-Fib), which means my heart beats irregularly. I take two medications for the condition and they are working well – just not with Ibrutinib. In July I began bleeding internally, got that under control, and began bleeding internally again in August. Ibrutinib was the culprit, which I had to stop taking after my oncologist determined preventing a stroke was a higher priority than fighting the CLL. Frustration.

A new trial study was authorized in September that Dr. Castro, my oncologist, urged me to consider. This study utilizes two drugs that are already FDA approved and is designed to determine what happens when the two are used together. I explored several other options and decided to enter the trial.

I am now being infused with Obinutuzumab (Gazyva) and high doses of Methylprednisolone (steroids). Dr. Castro believes the high dose steroids are the poor man’s Ibrutinib, accomplishing many of the same things at almost no financial cost whatsoever. I am in the first cycle of treatment and doing well. The Gazyva was created by a collaboration of Genentech, Roche and Biogen Idec and it works like lightning. Whereas the Ibrutinib was slowly reducing the number of cancer cells, after only two infusions of the trial combination the cancer is (momentarily) almost gone. This is quite an incredible result; it is truly amazing. While it’s not a cure for CLL, the goal is to achieve a deep remission, one that lasts several years until perhaps a cure is found. Researchers are hopeful they’re that close. The study lasts only six months (versus taking expensive pills forevermore) and I’ve already passed through the most rugged part of it. I’m hopeful about this treatment and pleased my body is cooperating.

I completed the first draft of Hangtown and have spent several months editing it. It needs more. I have the time; just need more energy to do the work necessary. I’m expecting that to come out of my treatment too.

Thank you for keeping up-to-date with me. Your involvement in my process makes a significant contribution to my well-being. I truly appreciate that.
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